Thank you. I did have a good sing; but spent a very sleepless night. It is a hard situation to deal with at the moment.
Here is what we are up against:
- he needs his PD meds in order to stop his tremor and improve his swallowing. They are not given on time. We have to be there to remind them.
- he needs a lorezepam at 3 pm as he becomes agitated otherwise. I am constantly reminding them to give it to him.
- food is put where he cannot reach it, so we go in and help him eat.
- they did give him a bed bath yesterday, but put his dirty pjs back on when there were clean ones in the locker.
- he has sore heels and I am taking in the cavillon cream and dealing with that - heaven knows what is happening with his sacrum, as I cannot roll him to see. I have spent months getting that right after the skin broke down. He was promised inflatable troughs for his heels, but when I left 4 hours later nothing had arrived.
- he is medically unstable with dropping BP and blood results indicating some mild kidney problem. The solution to that is proper food (see above) and plenty to drink - he cannot reach his drinks either.
- he needed a bed pan yesterday evening so I got a nurse to deal with it. 30 minutes later he was still sitting on it (not great with a new hip and when you and just skin and bone). I got a nurse and explained that he needed a suppository as he uses at home. She said she could not do that as a doctor had to prescribe it - from my experience in the last week or so it takes at least half a day to get a doc.
- I have left them notes with clear instructions about which tablets are dispersible, which melt under his tongue and which need to be swallowed in a spoonful of yoghurt, but they constantly get it wrong and I find the notes screwed up in the locker. He finished up with a naso-gastric tube so they could crush the tabs and put them directly into his stomach. All they needed to do was to listen to what I am saying. OH pulled the tube out anyway after 24 hours.
I could go on....and on....and on. It is a system under terrible pressure; and I have to add that everyone is unfailingly kind and polite and mean well, but they simply do not have time - they promise to do something then someone else demands attention and they simply forget it.
I have spoken to PD nurse today and she will talk to PD consultant to see if he can be moved to her ward which is a "frailty" ward.
I am beside myself with exhaustion and would love to be able to pop in once a day and see him and not be in this situation where the DDs and I are on edge and on duty all the time.
It is sad to see - I used to work in the NHS and cannot bear it.